There is an Enemy Within, Yet He Continues On…..

I have waited so long to write about this that the fire within has settled. I am prepared for the long haul, but also, not prepared at all. How do we prepare for the emotional, mental, and physical challenges that are to come? This is not a situation that we ever could have imagined. We have been slowly adjusting, but it is still surreal. My 52 year old husband, my intelligent, loving, funny, thoughtful husband, has Frontotemporal Dementia (FTD).

Looking back, symptoms may have been presenting as early as 2012. What we originally thought was depression, was probably the beginnings of this awful disease. By 2015, it had progressed into difficulty with word recall and minor memory issues. His doctor tested for every possible medical cause, and eventually sent him to a neurophysiologist. Three years ago this fall, that specialist told us that my 49 year old husband may have early onset dementia.

It was hard to believe that it was possible, but in the back of my mind, I knew it was true. He had been forgetting things I told him more than usual, and he had seemed a bit off for a while. The tests showed that he had a very high intelligence level, but his cognitive abilities were not matching up. By fall 2016, he had further testing at a memory clinic, and we were told that there was a high probability it was FTD. He is being treated accordingly, but there is no cure.

In the last three years we have been making as many memories as possible. We have traveled to Europe, Africa, and South America. One summer we took a minor league baseball road trip, in honor of his favorite movie, Bull Durham. We stopped and visited with many friends along the way. Friends we hadn’t seen in up to 25 years. We took a weekend trip to see one of his favorite football teams, the Kansas City Chiefs. We are living out our retirement dreams before we can’t anymore.

Two years ago, he went on disability from work. It was not in his plans. A disease he has no control over makes him feel like less of a man. He thinks he cannot take care of his family like he used to, but he has no idea how much he does. He goes to yoga most days, and I go with him 3 to 4 times a week. We were told it might help slow the progression of the disease. It has, and along the way it has also helped me to get in shape and strengthen, both mentally and physically. He grows a vegetable garden in the summer, and with his green thumb, we have an abundance of fruits and vegetables. He has taken up much of the family cooking and baking, making me look like a amateur after almost 30 years of marriage.

There are many ways to try to slow the disease. Memory games, puzzles, exercise, and small motor skill activities are a few. We will do anything to get as much time as we can, so he tries them all. He taught himself to knit last December, and by January he had made each of the kids a scarf. Intricate scarves with difficult stitches that look amazing! By March, he had finished a multiple panel afghan, and by May he had made me a varsity-style hooded sweater that looks like it was crafted by a professional. Last week he started knitting me socks. He has set the bar so high, I’m hesitant to even try to learn.

Unfortunately, he can’t do everything he used to. Over time, he loses the ability. We have seen these changes. They are happening slowly, but they are still happening. We might be able to slow the roll, but we cannot stop it. There is one thing we won’t let it do though, and that is bring us down without a fight.

FTD has brought us to a place we never thought we’d be. We have lost, and we have gained. It is a blessing and a curse, all at once. We are experiencing retirement in our fifties. We have been blessed to travel around the world. It is all temporary though. One day, and we have no idea when, we will be living a nightmare.

There is an enemy within him, and it is Frontotemporal Dementia.

“A Storm’s a Brewin'”

We have had a house guest this week. A nasty and violent visitor reeking havoc where it is not wanted. We have been free of its wrath for several years. I guess our time was up. Stomach flu, we abhor you.

Bill stayed home Tuesday, to keep tabs on me…..from a distance whenever possible. I had spent the night with the porcelain prince, and although he proved useful, I did not ask for, nor want, the date. It had been years since I had spent such time with him, and hope it’s years before we meet in this manner again.

Shortly after 9am, Bill came running to the bottom of the stairs in concern. The visitor was raging again. Loudly. Once he found me resting peacefully, he started searching for the source. The youngest child was at school, the sleeping, middle child,  was fine, and the oldest was at chemistry class….or not. Ethan had made it to school, taken a quiz, turned in a paper, and told his professor that he was ill and would have to make up the lab. He raced home at break-neck speed, pulled into the driveway, grabbed his bag, opened the car door, dropped down to the ground, and decorated the front lawn with his breakfast. He was driving my car.  Bonus points for keeping it outside. Number one child, was the second victim.

It was at this point that Bill and child number two started to bond in brotherhood, to protect their right to health.  The Clorox wipes and Lysol came out. Lines were drawn. We are here. You are there. Do not cross this line.  They went to the raw juice bar, and downed immunity ginger shots together, then questioned their sanity as the intense spice burned its way down to their bellies. They each had an extra large green juice chaser, cooling the flame,  and cleansing the body, in hopes of further protection. They swore their allegiance to health. They would not fall.

Yesterday, for whatever reason, after 24 hours of reprieve, it felt safe. I don’t know why I thought it was okay to take a deep breath, but I did. I continued washing the linens, towels, and bacteria-laden clothing, optimistic that a full family infection had been avoided. Unfortunately, as I walked past Brennan late in the afternoon, he angrily mumbled….”a storm’s a brewin,’ and I blame you.”  Dad walked in minutes later, pumped his fist in the air as he saw Brennan, still residing in the land of the living, and shouted “Solidarity, son! You’re still on the island!” He was answered with doubtful head shakes. As I write this, the second child is the third to go down.

There were only two left on the island. Father and daughter allied. Fist bumps ensued. Who would be the last family member standing? How long would they last? Realization hit. The allies became competitors.

At 3:12am, unusual activity is heard from the bathroom, and lights are being turned on. From a dark bedroom the sounds of the third child…..”Hey, Dad?! Are you off the island?! I imagine a fist pump may have taken place n that dark room. The fourth has succumbed. Survival of the fittest.

Carleigh is still going strong. I fear she may be dripping in germs, but she has a reading at mass today, and she has no signs of illness. May God protect her and her classmates from our unwanted visitor, and me from their parents, if things go awry.

 

 

The Unexpected

In honor of Crohn’s and Colitis Awareness week, I am reposting some of my Crohn’s related entries from earlier this year, for those of you who may have missed them. Feel free to share, and spread awareness, near and far!

When our first child was about two years old, I realized that my health had been slowly deteriorating. I was often out of breathe, with little action to cause it, tired, and I was having digestive issues. I made an appointment to see my doctor, not really expecting anything serious. I had no idea that this would be a pivotal point in my life moving forward.

In May of 1998, I was diagnosed with Crohn’s Disease. This can affect any part of the digestive tract, and although it can go into remission, it is a lifetime disease. My Crohn’s was basically limited to my large intestine. It became inflamed like a tire, both inside and out. It required medications to reduce the swelling, iron for anemia, due to the bleeding it caused, and a restricted diet. The diagnosis was very upsetting at first, but I soon felt that it was manageable, and went back to life as it was, with a few more pills and a few less tasty foods to eat. I was months away from getting pregnant with our second son.

The following summer, after our son was born, I started having increased symptoms from the Crohn’s. These things creep up on you. You feel like you have it under control. Change the diet a little more, change the medication. Tell yourself that things will get better. Only they don’t.

On January 2, 2000, while most of the world was taking a sigh of relief that their world didn’t fall apart as many predicted, mine did, as did my husband’s. Or at least it began to. I went to the doctor after feeling like I had been suffering from a flu bug for a week or so, and ended up hospitalized for 2 weeks. It would be the first of a number of stays. After the pregnancy, running around with two young children, the stress of two relatives passing away around Christmas, and my denial of the symptoms, I was so dehydrated, and my blood pressure was so low, they didn’t know how I was even standing up.

In the year to come, I would have 105 degree fevers, tachycardia (racing heart), extreme weakness, handfuls of pills, a severely restricted diet, and I would go down to 88 pounds. The boys were now 4 years and 6 months. My husband had to travel quite a bit for work, and my mom would come help me. When she couldn’t be there, you would find me feeding the baby while I was wrapped in a blanket due to chills. I lived hour to hour.  Morning nap, afternoon nap, bedtime. Those were my goals to make it throughout the day.

In the summer of 2000, I was once again hospitalized. This time for a staph infection I developed after hitting my leg on the car. For most, this would be a two day stay. For me, it was seven, including my birthday. My immune system was just too compromised from the Crohn’s.

There would be no relief for two more years. In 2001, I developed cataracts from the steroids I had to take for the inflammation, and at the age of 32, I would need cataract surgery. In April 2002, I lost vision in my eyes due to swelling of the optic nerve. This would require a hospitalization as well. Though I did eventually regain most of my sight, I still have blind spots, and have to be checked every few years.

Finally, in the summer of 2002, when all medications had been tried and none were working, I  realized that I had to take more drastic measures. I could not be there for my boys as I wanted to be. I couldn’t help at the school, or take them to the park. This disease was taking me away from my kids. I couldn’t live with that. I chose surgery. My large intestine was completely removed. When they removed it, my heart rate immediately went back to normal, and I mean at that very moment in surgery. They said it was almost perforated in so many areas that if I hadn’t been on a strong antibiotic for so long, I would have had a massive blood infection. I had no idea how close I was to dying.

I will live with an Ostomy bag, for the rest of my life. It was one of the best decisions I ever made. I have never regretted it. Not for a single second.

 

 

 

 

 

 

 

 

 

 

The Unexpected

When our first child was about two years old, I realized that my health had been slowly deteriorating. I was often out of breathe, with little action to cause it, tired, and I was having digestive issues. I made an appointment to see my doctor, not really expecting anything serious. I had no idea that this would be a pivotal point in my life moving forward.

In May of 1998, I was diagnosed with Crohn’s Disease. This can affect any part of the digestive tract, and although it can go into remission, it is a lifetime disease. My Crohn’s was basically limited to my large intestine. It became inflamed like a tire, both inside and out. It required medications to reduce the swelling, iron for anemia, due to the bleeding it caused, and a restricted diet. The diagnosis was very upsetting at first, but I soon felt that it was manageable, and went back to life as it was, with a few more pills and a few less tasty foods to eat. I was months away from getting pregnant with our second son.

The following summer, after our son was born, I started having increased symptoms from the Crohn’s. These things creep up on you. You feel like you have it under control. Change the diet a little more, change up the medication. Tell yourself that things will get better. Only they don’t.

On January 2, 2000, while most of the world was taking a sigh of relief that their world didn’t fall apart as many predicted, mine did, as did my husband’s. Or at least it began to. I went to the doctor after feeling like I had been suffering from a flu bug for a week or so, and ended up hospitalized for 2 weeks. It would be the first of a number of stays. After the pregnancy, running around with two young children, the stress of two relatives passing away around Christmas, and my denial of the symptoms, I was so dehydrated, and my blood pressure was so low, they didn’t know how I was even standing up.

In the year to come, I would have 106 degree fevers, tachycardia (racing heart), extreme weakness, handfuls of pills, a severely restricted diet, and I would go down to 88 pounds. The boys were now 4 years and 6 months. My husband had to travel quite a bit for work, and my mom would come help me. When she couldn’t be there, you would find me feeding the baby while I was wrapped in a blanket due to chills. I lived hour to hour.  Morning nap, afternoon nap, bedtime. Those were my goals to make it to throughout the day.

In the summer of 2000, I was once again hospitalized. This time for a staph infection I developed after hitting my leg on the car. For most, this would be a two day stay. For me, it was seven, including my birthday. My immune system was just too compromised from the Crohn’s.

There would be no relief for two more years. In 2001, I developed cataracts from the steroids I had to take for the inflammation, and at the age of 32, I would require cataract surgery. In April 2002, I lost vision in my eyes due to swelling of the optic nerve. This would require a hospitalization as well. Though I did eventually regain most of my sight, I still have blind spots, and have to be checked every few years.

Finally, in the summer of 2002, when all medications had been tried and none were working, I  realized that I had to take more drastic measures. I could not be there for my boys as I wanted to be. I couldn’t help at the school, or take them to the park. This disease was taking me away from my kids. I couldn’t live with that. I chose surgery. My large intestine was completely removed. When they removed it, my heart rate immediately went back to normal, and I mean at that very moment in surgery. They said it was almost perforated in so many areas that if I hadn’t been on a strong antibiotic for so long, I would have had a massive blood infection. I had no idea how close I was to dying.

I will live with an Ostomy bag, for the rest of my life. It was one of the best decisions I ever made. I have never regretted it. Not for a single second.